November 6, 2014
While I think health care social media is such a powerful, resourceful and life-changing patient medium, I can’t help but get depressed each time I check in at Facebook and review the desperate but VERY REAL posts from brave members of the various Crohn’s/Ulcerative Colitis “Groups” to which I subscribe and read about patient after patient who must “fight” simply to be treated with dignity by their own physician. This “fight” is either an internal one whereby they are forced to stand their ground and trust their bodies despite skepticism and contempt so palpable in the doctor’s office that it becomes the “elephant in the room” or it becomes overt when some doctors challenge their capacity to handle adversity, disappointment or pain. That said, for the most part, there are now WONDERFULLY gifted, dedicated and compassionate Inflammatory Bowel Disease (IBD) doctors all over the world. But when I read these disciplined, intelligent patient Posts about such personally troubling emotional feelings resulting from seemingly experienced gastroenterologists telling them their TEXTBOOK Crohn’s or Ulcerative Colitis severely painful and/or disabling symptoms are “just in their head” – I want to cry about the barbaric diagnostic and treatment culture which STILL affects patients with Crohn’s Disease and Ulcerative Colitis.
The responsibility of making IBD Treatment Decisions can emotionally overwhelm IBD patients
I understand the skepticism of patients reading this who have life-threatening diseases facing life or death consequences or those with diseases so rare they aren’t even addressed by pharmaceutical companies because they don’t affect enough people to make such an endeavor profitable but I don’t know of another incurable disease like IBD whose recommended treatments are often prescribed based on the “possibility” of them working AND these same treatment gambles routinely cause medical problems which can dwarf the devastating effects of Crohn’s Disease or Ulcerative Colitis. There is also something about the incurable “grey area” in which IBD resides that makes some gastroenterologists and colorectal surgeons feel entitled to manipulate IBD patients simply because they know more about Crohn’s or Colitis or because “any” treatment which “may” help is better than the patient’s current reality of hopelessness and despair. Finally, physically and emotionally compromised Crohn’s Disease and Ulcerative Colitis are too often tasked with being forced to make so many impactful decisions about their care that it can cross the line of them truly making an “informed” decision. The frequent unpredictable hospitalizations and constant suffering is often too much to bare for the patient. When these patients must also assume cogent responsibility for making the difficult IBD treatment decisions, that’s when the non-intentional infliction of emotional distress could overwhelm them. Sometimes it’s just a byproduct of an incurable disease which has no upsides but sometimes it’s caused by arrogant doctors who don’t care about the IBD patient’s emotional well-being. When you think about healthcare professionals acting like that and you contrast it with the heroic selfless efforts of doctors and nurses who travel to West Africa without hesitation to help contain and eviscerate the Ebola Virus to help people they don’t know, at potentially grave harm to themselves, this is deeply disturbing.
The IBD Doctor “God Complex”
While I have been so lucky to be treated by unbelievably bright, caring and compassionate doctors and nurses in my thirty (30) years as a Severe Crohn’s Disease patient, I’ve also witnessed such galling arrogance in the practice of medicine that Alec Baldwin’s portrayal of a doctor with a “God Complex” in the movie “Malice” seemed more like reality television to me.
In my case it happened when a great surgeon, who had operated on me several times and been paid his fee each and every time, performed a simple surgical follow-up on me in his private office after I was discharged from the hospital for a few weeks. There wasn’t much for him to decipher other than whether or not I had developed an obvious infection and since I felt fine, I figured the appointment and exam would be uneventful. I was wrong. As he artistically salivated at his creative surgical genius on display in and around my belly-button, he understandably began making sure I had not developed an incisional hernia which had been the case with several prior surgeries. In furtherance of that specific hernia exam and as he was medically-appropriate in holding one of my testicles in his hand, he looked up at me and said the following: “You know, there is still a $3,450.00 balance due on your account?”
Had that been the guy who fixes my car’s transmission, I would have driven my knee into his face. But because I knew I might need him at some point in the future due to my extremely complex case of Severe Crohn’s Disease, I diffused the situation by joking about how he can’t be that big of an asshole in light of how much money I’ve paid him over the past few years. He then loosened his grip on my manhood, confirmed I was doing just fine medically and got behind his throne of a desk to continue his money collection efforts. Thankfully, I was somewhat of a Crohn’s veteran at that point and I was able to laugh about the despicable manner in which he treated me. And please understand I never questioned his right to get paid his fee for the extraordinary surgical work he had performed on me. But there is a time, place and manner in which to pursue collection efforts regarding his surgical fee. Call me crazy, but, it is not the appropriate person, time, place or manner when your surgeon commences collection discussions of his surgical fee while he conducts an important follow-up exam and has your testicle in his powerful grip.
The necessary “Survival” Mental Mindset of “Doing Time” when hospitalized for Crohn’s Disease or Ulcerative Colitis
I’ve written a candid and funny book about many of the dignity-deprecating situations Crohn’s Disease and Ulcerative Colitis patients are placed in during their frequent hospitalizations because when it first happened to me I was shocked at the cruel and inhumane treatment which seemed disproportionately prevalent among those specific conditions. In retrospect, I think I wrote “Confessions of a Professional Hospital Patient” to save the money I would have had to spend seeing a shrink to decompress from all I had been exposed to. And it worked. I grew thick skin and no future hospitalization scared me so long as I went into “survival mode” and mentally prepared to “do time” prior to my admission. But years later, I let my guard down at one of the world’s most well-respected medical institutions and internationally recognized brand names for innovative, life-saving, pioneering medical treatments, where I was confident my vulnerabilities as a patient with an incurable disease would be respected and not exploited. To this day, I am still astonished at the “patient-irrelevant,” doctor-centric, myopic, arrogant and downright cold treatment I received there. As soon as the staff realized my case was going to skew their post-operative efficiency statistics, I was medically treated like the numerical “outlier” who had altered their promotional efficacy aspirations. It is also the ONLY hospital or medical facility in my thirty (30) years with Severe Crohn’s Disease which began a colonoscopy on me despite someone forgetting to sedate me and within seconds it felt as if the doctor was trying to drive a Buick into my body through my rectum. I screamed in pain and that international signal of despair was not recognized by this schmuck so I kicked him in the face. The colonoscopy was rescheduled.
The IBD Facebook Group Posts from Patients who continue to experience unnecessary emotional stress, humiliation and crude treatment from doctors and in hospitals
I could go on and on with the nightmarish real life medical scenarios I have endured because of my IBD but I thought patients and doctors have evolved over the past few years such that being hospitalized for IBD is more of a “patient-centric” experience. Regardless, the advances in diagnostic technology would seem to silence any remaining arrogance but EVERY DAY on Facebook in 2014, I read about MANY IBD patients going through similar humiliating and emotionally devastating experiences and I don’t understand why this continues to happen. For example:
There’s an IBD doctor refusing to execute the appropriate social security disability paperwork because the patient refuses to try Biologic drugs for reasonable and rationale fear of their potential side effects such that the doctor said something to the effect of: “Well, I can’t help you with your social security disability application since ‘you haven’t tried EVERYTHING.’”
There’s a suburban Inflammatory Bowel Disease doctor with an office sign saying “Advanced Gastroenterology” yet he treats a VERY complicated case of Indeterminate Colitis (i.e., a patient with symptoms and manifestations of BOTH Crohn’s Disease and Ulcerative Colitis) by simply hospitalizing the patient every few weeks and doing nothing other than prescribing steroids and pain medications hoping the incurable disease will soon “learn it’s lesson” and leave on it’s own stead when he should be referring the patient to a more experienced Inflammatory Bowel Disease practice.
There’s gastroenterologists all over the world who refuse to prescribe narcotic pain medication or refuse to educate the IBD patient about the board-certified medical practice of “Pain Management” when his patient with Crohn’s or Ulcerative Colitis is in such severe pain she feels hopeless with no quality of life and comes to him in tears begging for answers. Instead, he tells the patient the pain is “not that bad” or that there’s too many downsides to taking opioids for IBD to seek some semblance of a quality of life. [Again, call me crazy, but shouldn’t it be the chronic patient’s right to make an informed decision about managing his or her Pain or determining his or her possible Quality of Life?]
There’s compassionate Crohn’s and Colitis doctors treating patients for years and unfortunately they may have to recommend surgery at some point. Temporarily, that passes the patient care responsibility to the IBD surgeon. But, I have seen NUMEROUS instances of IBD patients having successful resection surgeries and resuming their lives, thus putting them back under the care of their longtime treating gastroenterologist, yet when they subsequently experience terrifying and painful issues in and around the resection site which could be recurrence of their disease or “mechanical” issues like the development of strictures or adhesions, they call these doctors for an urgent appointment but are told to either go to the emergency room or wait SIX (6) WEEKS for the next appointment. Waiting WEEKS to be seen by a doctor in such an instance could be life-threatening and the understandable impersonal, “band-aid” and triage nature of emergency room treatment is not appropriate for a patient with complex Crohn’s Disease or Ulcerative Colitis especially when they have already been hospitalized Fifty (50) times and are also responsible for taking care of their children. [Shouldn’t the treating gastroenterologist try and carve out Fifteen (15) minutes in his schedule to help such a suffering patient and parent? Shouldn’t the potential emotional harm to the chronic IBD patient be factored into such rude and impersonal decision-making?]
There’s hospitalizations from hell all because of one (1) health-worker who doesn’t understand the “nuances” of IBD such that they actually tell the patient they “look fine” and don’t need to be in the hospital despite the patient being unable to hold down jello after being in the hospital for two (2) weeks on high doses of intravenous potent steroids. That said, nearly every nurse I have ever encountered has been the key to a successful and stress-free hospitalization but too often this type of IBD patient must figure out the hospital protocol for respectfully removing this healthcare worker from their case because being anxiety-ridden before every nursing shift change is no way to recuperate in a hospital from an intestinal obstruction so intense the patient still can’t digest jello after two (2) weeks of being on high doses of steroids.
There’s ego-maniacal Pain Management doctors who robotically treat different Crohn’s and Ulcerative Colitis patients in the same exact manner so that they are sure to cover their behinds with the DEA while not for a minute listening to the patient’s concerns and trying to utilize their formidable expertise to address that SPECIFIC IBD patient’s INDIVIDUAL problem. These same control freaks also unnecessarily tweak the IBD patient’s medication dosages for no reason other than to validate and feed their narcissistic personality disorders. [It is very difficult to find a compassionate and professional Pain Management doctor given the over-reaching, politically-motivated laws which make it increasingly difficult for patients with chronic pain to get the medications they need in a responsible manner. Perhaps, more importantly, this also makes the medical practice of Pain Management VERY DIFFICULT due to the stringent record-keeping requirements and other laws and regulations which add significant financial costs to operating such a medical practice. Because of this, I am SO grateful for the compassionate Pain Management Doctors who nevertheless decide to help people like me and SO MANY OTHERS who live with chronic pain.]
Finally, there are different versions of the uncaring, “ultimatum IBD doctor” who, without any nuance or respect whatsoever, presents a terrified IBD patient with a “take it or leave it” proposition regarding their IBD treatment and the often physically or emotionally compromised patient must then make the best decision regarding drug or surgical treatment options where the short- or long-term side effects and complications of one option is potentially worse than those from each of the others. Here’s a slightly edited version of a 2014 Post about this which was only edited to preserve the patient’s confidentiality:
“I refused to go on a Biologic drug and my doctor refused to put me back on steroids, which had worked in the past. So my father called the doctor and told him he’s concerned that I’m not doing well and that ‘forcing’ treatment options upon me without educating me about the possible side effects and complications is a bit heavy-handed and intimidating to such a respectful longtime patient who has suffered enough that she doesn’t need emotional pressure from her own doctor. As result, the doctor’s office called me and wants me to come back in. I don’t even know what to tell him. Is there something in the middle that doesn’t have as many side effects as the Biologic drug or the steroids? There has to be a middle-ground treatment option here. I don’t feel like my disease is bad enough to have to start with the Biologics and then possibly deal with their horrific side effects. I’m so confused and scared at the future of my disease.” [I think it’s FANTASTIC this patient has such a supportive forum like a Facebook Group to vent like this and to seek information from other patients in similar situations but is it just me who thinks this particular doctor is not doing his job? Is it just me who thinks this doctor is a bully?]
Sadly, these stories never end. Often times, I am sought out to speak to some of these patients and it is truly my pleasure to try and help them but I am also disturbed at how they are being treated by their doctors. If I hadn’t experienced similar despicable treatment by a few doctors first hand during Two-Hundred (200) hospitalizations and Twenty-Five (25) major surgeries for Severe Crohn’s Disease, I’d never believe these Facebook Group Patient Posts. I imagine this happens with many different diseases which are incurable but the consistency and pervasive presence of these Crohn’s Disease and Ulcerative Colitis patient Posts on all health care social media platforms is alarming. I don’t know the answers which will alleviate these horrific IBD patient concerns but I damn sure know it is a MAJOR problem which must be acknowledged and addressed by medical professionals.
I hope more doctors treating Inflammatory Bowel Diseases are able to “connect” with the hopelessness, vulnerability and depression which every IBD patient experiences at one time or another. But too many doctors still bully Crohn’s Disease and Ulcerative Colitis patients into making the best choice between bad to worse treatment options while they are either in pain, uncomfortable or emotionally compromised by their predicament. I guess what I’m saying is the best doctors always try to see things from the patient’s perspective. THAT is a great model to build upon for the physician and patient collaboration necessary to most effectively treat such a challenging and complex disease. To that end, actor William Hurt demonstrates this brilliantly in this scene from the 1991 movie, “The Doctor” (pardon the Spanish subtitles):